The Spectrum of Caregiving and Palliative Care in Rare Diseases, August 2014
Location: NIH Natcher Conference Center, Bethesda, MD
Description: The findings and recommendations resulting from the Workshop will provide guidance to the extramural community as well as to NINR and other Institutes, Offices (e.g., ORDR), and agencies in developing strategies for advancing the science of palliative care and caregiving in rare disease and research programs. It is anticipated that a funding opportunity announcement will result from the Workshop.
Fourth International Chordoma Research Workshop, Thursday, March 21, 2013 - Friday, March 22, 2013
Location: Liberty Hotel, Boston, MA
Description: A primary goal of the ICRWs is to facilitate new relationships and collaborations, thereby enabling research that otherwise would not be possible.
RDCRN 3rd Conference on Clinical Research for Rare Diseases, Tuesday, October 02, 2012
Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD
Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: direct instruction of trainees and new investigators in rare disease research methodology; development of a reusable curriculum/syllabus on rare disease research methodology; and stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases.
Third International Chordoma Research Workshop , Wednesday, March 16, 2011 - Saturday, March 19, 2011
Location: Bethesda North Marriott , Bethesda, MD
Description: This workshop was an opportunity to exchange ideas and develop collaborations with a multidisciplinary group of researchers and clinical specialists from across the globe. As in years past, this workshop stimulated cross-disciplinary thinking spanning a breadth of topics from developmental biology to drug development and advances in surgical approaches.
Overcoming Barriers to International Clinical Trials for Rare Cancers , Friday, December 10, 2010
Location: Bethesda, Maryland
Description: The goals of this conference were to introduce key institutional players to the topic of international clinical trials in rare cancers and to establish an ongoing dialogue. Participants left the meeting with a set of specific priorities that need to be enacted to promote these trials. The meeting promoted consensus on the way that resources are prioritized to address rare cancers. Participants were asked to convey the content of the meeting to their constituencies and to follow up with pilot concepts.
VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases , Thursday, March 18, 2010 - Saturday, March 20, 2010
Location: Palais Rouge Convention Center, Palermo, Buenos Aires, Argentina
Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities.